Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

I’m not one for wallowing in self-pity or accepting invites to pity parties. It’s not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don’t lack empathy for others (my advocacy work is a testament to that) and I’m constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I’m known for helping. I admit that some people are beyond my type of help, but I always suggest they should speak to specialists in the area where they need the help. My disclaimer looks after most scenarios. p.s. I don’t like having a disclaimer as I’m a genuine person, but it was advice I took some years ago.

I’ve written many blog posts on this subject. I even suggested to an ENETS conference panel that this was an unmet need because many NET patients having been diagnosed late and undergone treatment, need help because it often means a reduced quality of life. At least one doctor (a NET specialist) seemed to take umbrage at my suggestion, perhaps guilt given that he drew his boundary at treatment and not the effects of it. However, when I look at some of the output from the national NET organisations/foundations, it would appear I was not alone in suggesting that more help is required to support people post-diagnosis/treatment.

In the early days, I thought I was going to die

On the Cancer Journey, don’t forget to live your life

Sometimes I have to climb hills for the mental challenge

Metastatic Neuroendocrine Tumours – Incurable but treatable

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

General Clinical Trials Disclaimer

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided in the clinical trials document. It’s very important to check the trial inclusion and exclusion criteria before making any contact. If you need questions, the articles here is very useful Questions to Ask About Clinical Trials | Cancer.Net

The inclusion of any trial within this blog should not be taken as a recommendation by Ronny Allan.

Finally

Whenever I post about a trial or study, some people get excited without understanding that these new treatments and capabilities can very often take years to come to fruition and it’s also possible that clinical trials can be halted, or that national approval agencies will not approve the final product. Plus, not everyone will be eligible, so always check the exclusion and inclusion criteria in the relevant clinical trials document. Please bear that in mind when reading studies/clinical trials posted on RonnyAllan.NET